I just read this and I feel SICK 😒😒😒 - Thyroid UK

Thyroid UK

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I just read this and I feel SICK 😒😒😒

Pamela0106 profile image
Pamela0106
β€’26 Replies

β€ͺA heart wrenching & SICKENING read!πŸ˜’πŸ‘‡πŸΌβ€¬

JAQUELINE'S OWN HORRIFIC STORYπŸ‘‡πŸΌ

tpauk.com/main/article/jacq...

β€ͺTHIS IS WHY YOU MUST SIGN THE PETITION and support Thyroid UK's T3 Campaign and ITT CAMPAIGN to stop the withdrawal of T3 and to seek improved guidelines in Thyroid Treatment!

PETITION πŸ‘‰πŸΌ goo.gl/oXevJj‬

β€ͺπŸ¦‹β€οΈβ€¬

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Pamela0106 profile image
Pamela0106
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26 Replies
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AngieAsh profile image
AngieAsh

Hi. The story link isn't working for me. I have already signed the petition though.

Serendipitious profile image
Serendipitious in reply to AngieAsh

AngieAsh,

I was able to access that link but this might be easier to reach:

tpauk.com/main/article/jacq...

I haven't finished reading it just yet but it is incredibly sad.

AngieAsh profile image
AngieAsh in reply to Serendipitious

Thank you. That truly is sickening to read. I hope her death ultimately was not in vain.

Pamela0106 profile image
Pamela0106 in reply to AngieAsh

Edited so link works now x

Pamela0106 it should be sent to every GP and Endocrinologist in the UK.

Pamela0106 profile image
Pamela0106 in reply to

Right?

Absolutely heartbreaking. I can't begin to comprehend how so many can be in the same position yet each of us are fobbed off with Somatoform nonsense!

Absolutely disgraceful!!!

in reply to Pamela0106

Pamela0106 agree with you, it's shocking. Yep, much easier to prescribe ADs where the surgery receives Β£1,650 worth of QoF points for each new diagnosis.

I don't know whether there were any further developments but certainly the Health Secretary needs to read it and take responsibility.

Ineedmythyroid profile image
Ineedmythyroid in reply to

Hi cinnamon_girl,

I'm rather new here (and to the UK) and was wondering what you mean with:

Yep, much easier to prescribe ADs where the surgery receives Β£1,650 worth of QoF points for each new diagnosis.

Do you mean that GP's get some kind of payment for prescribing the synthetic T4 medication???

in reply to Ineedmythyroid

Ineedmythyroid no, the surgery receives money when GPs prescribe anti depressants. It's all part of a complex system whereby they're 'rewarded' with QoF points for 'managing' particular conditions. Anti depressants attract the highest number of QoF points.

content.digital.nhs.uk/qof

Up until a few years ago diagnosing hypothyroidsm attracted a small number of QoF points but now isn't included.

Hope that makes sense!

Clutter profile image
Clutter

Pamela0106,

This is so sad. I thought organic illness was supposed to be excluded before a psychiatric diagnosis was made. Jacqueline Falkowski's GP and endocrinologist seem to think psychiatric illness should be ruled out before investigating anything else. It's a great shame the endocrinologist didn't consult with tertiary experts at Addenbrookes as she obviously did have resistance to thyroid hormone to be taking so much T3 without overmedicating.

Pamela0106 profile image
Pamela0106 in reply to Clutter

It really is. 😒

Completely agree. Somatoform is a get out of jail clause in my opinion.

I would be really interested to know the % of those diagnosed with Somatoform Disorder who also happen to be thyroid patients ....... would make for an interesting case I am sure of it!

Kitten1978 profile image
Kitten1978 in reply to Pamela0106

"Somatoform" or "medically unexplained symptoms" are simply new, more trendy terms for "hysteria" or "wandering womb". When medics are unable to provide to accurate diagnosis and treatment...or when treatments provided don't work they eventually suggest that something psychological is going on. It's a great way of getting rid of "heart sink" patients. Patients get labels of "depressed", "malingering", having a "functional disorder" or similar labels...and from that point nobody ever takes them seriously. They end up on psychotrops, which frequently make things worse, or, after being stuck for months or years on therapy waiting list. If they are "lucky" they may see a mental healt nurse or a psychologist. Therapy doesn't help but the label of being mentally ill will stick even more firmly...

I think it would be fascinating to know how many people in primary and secondary mental health services, chronic pain, and chronic fatigue services have thyroid disorders.

Thank you for posting Jacqueline's story Pamela0106 . It made a harrowing read. It should be an obligatory reading for medical students...

phoenix23002 profile image
phoenix23002

This is beyond sad. It is criminal in it's indictment of GPs and Endos who refuse the evidence that is right under their arrogant noses. Shame there can't be a class action suit brought against some of the more outrageous practitioners.

amala57 profile image
amala57 in reply to phoenix23002

There can be!

Janneta profile image
Janneta

I found it absolutely disgusting in the treatment etc! Poor poor lady to have to have gone through that. Ive shared it in as many media sights as I'm.

Pamela0106 profile image
Pamela0106 in reply to Janneta

Thank you. I totally agree.

The more signatures the sooner we can at least try again to stamp out this neglectful attitude x

Iphoenix profile image
Iphoenix

I sincerely hope the medical profession will learn from this letter and reform their treatment of women who only want to feel "normal" again. Last year I handed in a note to my GP surgery begging them to allow me to keep T3 (I'd had it for 3 months) but all 3 of them said No. I wonder if one of them or their wives had this disease they would have felt differently!

I am so sad for Jacqueline's family and friends that they lost such a wonderful lady and how they must have valued her fighting spirit, I certainly do.

Pamela0106 profile image
Pamela0106 in reply to Iphoenix

I had the exact same thing happen with my T3. Was given it for a trial and it's working wonders and regardless of that they told me I'm getting no more of it regardless of its impact. Because the Health Board intervened and told them not to prescribe any more!

Absolutely shocking.

I wrote a plethora of complaints and escalations through every avenue I could find for my practice, pharmacy and Health Board. I had my MP do the same on my behalf.

I'm now delighted to tell you all that yesterday they agreed to give me T3 again and have added it to my repeat prescriptions!

Goes to show the fight works sometimes. We just shouldn't have to go to those lengths! X

spongecat profile image
spongecat

This sickened my heart to read what is effectively her suicide note.

What a brave and clever woman to write such a brilliant assessment with excellent research as well as to how many are being let down. Every word resonated.

Bless you, Jacqueline.........a LOT needs to change. Down with elite-founded guidelines that do not serve patients!

Pamela0106 profile image
Pamela0106 in reply to spongecat

So true! Well put xx

I've read it before, but it still makes for a very sad and painful read, a second time around. It's simply disgraceful that a person should consider, never mind actually take their life for these reasons. It is particularly powerful for me today, just 24 hours after having my own T3 withdrawn without warning, with no alternative arrangements being put in place to replace my 20 mg of Liothyronine.

Janneta profile image
Janneta in reply to

Do your best to complain and get it back. Happened to me and went without for 7 days. Pain is immense, couldn't go to work and had to put back lots of clients. I'm self employed clothing designer, have staff, but I do all the patterns, designs and new items myself. Just couldn't work! Now 25 days back on 20mg Liothyronine still in pain and recovering, but at least back at work now.

Was on 20mg Liothyronine with 125mg Levothyroxine. Now back on 20mg Liothyronine and reduced to 75mg Levothyroxine.

in reply to Janneta

Hi Janneta, likewise I was self-employed, and in my case, single, and needing, financially, to work; but eventually gave up trying to achieve anywhere near good health in March, and retired. I have a faulty aortic valve too, and awaiting my Cardio's decision that I've reached the point where surgery is to be scheduled; so sounding particularly pathetic I know, but am not sure I've got the get up and go to fight my case on the T3.

Janneta profile image
Janneta in reply to

I'm lucky I'm not on my own, but then you're not either. You've got everyone on here πŸ˜‰

Kitten-whiskers profile image
Kitten-whiskers

Oh my goodness, absolutey heartbreaking. I know longer feel bad for having arguements/complaining about the medical profession.

This is truely shameful :<

webar4780 profile image
webar4780

It is a very sad fact, that there are so many of us, that totally get what is being said here.

What a sacrifice. We can only pray that changes will be made. It will be more tragic, if no changes in assessing, and treating, thyroid patients are made.

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